by Christine E. Staple Ebanks
“As parents of children with special needs we don’t have the power to make life ‘fair’, but we do have the power to make life joyful.”
Oh Mommy, where art thou? Ever wondered where the “mommy” role ends and you, the person, an individual in your own right, begin? Are the two even separable? I reflected on this one evening as I gave Nathan his bath.
Although familiar and predictable, it had been a very long and tiring weekend. I was exhausted. That weekend, I wasn’t just Nathan’s chief caregiver, but also the caregiver for my father-in-law, who had been diagnosed a year before with Parkinson’s disease and early dementia. This was his live-in caregiver’s weekend off. She was my household help as well. Her being off, meant that I also had the duties of cooking and tidying up. It took all my energy to ensure both Nathan and my father-in-law’s needs were met.
Clearly, I had taken on too much. I was in over my head—overwhelmingly “waayy” in! But, from the moment my eyes opened that Saturday morning, my brain was in Global Positioning System (GPS) autopilot mode—planning, organizing, and juggling to make everything fit. On the surface, it appeared as if I did it all, effortlessly. Yet, all I really wanted to do was to go back to my bed. I pictured myself curled up all day in bed, like a kid again, with not a care in the world.
I made it through that Saturday . . . somehow.
Sunday passed and with it the weekend. And I survived, thankfully, to live through to Monday. There I was, nearly half-way through giving Nathan his evening bath.
As I gently sprayed water on him, Nathan squirmed in the bathtub—his eyes danced and giggles punctuated his every move. The sound of his laughter bounced loudly off the bathroom walls. Having felt at ease, I smiled, amused by Nathan, who was happy and alive with energy, frantically grabbing at the water with his little hands. Of course, more than his body was washed in the process. The bathtub sides and bathroom floor shined—his particular bath time trademark.
Here was a child, living the impact of cerebral palsy (CP). But he wasn’t just any child. He was MY child. My Nathan. My lifelong responsibility of care.
As Nathan’s bath time joy overflowed, along with the water spilling over the edge of the tub, the memory of that fateful day when I first heard the words, “Mrs. Ebanks, your child has a disability, cerebral palsy,” flooded my mind.
Nathan was only nine months old when he was diagnosed. For a while, I hoped against hope that it was a mistake, or that he would be “fixed.” I searched up and down and all around and chased after every “remedy” I heard. We experienced the gamut of hyperbaric oxygen therapy, conductive education, suit-therapy, craniosacral and hydrotherapy as well as many others. Yet, here we were, broken from all of the treatments. Nathan, on the cusp of puberty, was still unable to walk, sit independently, feed himself, talk, or care for himself. In many ways, he was still like the newborn little baby we brought home from the hospital. And, in many ways, he was not.
Over the years, caring for Nathan has become second nature for me and my family. People who observe us are always in awe because we present as one well-tuned system. But there are times when I am by myself—bathing, cleaning, feeding, and taking care of Nathan—while my husband, Robert is at work and our three older children are out. It is during these times when an acute sense of isolation and “aloneness” threatens to take over. These are the times when I often feel . . .
Overwhelmed. . .
Alone. . .
Frustrated. . .
Miserable. . .
. . . that particular Monday evening was one of them.
Maybe it was because our family’s dynamics were changing. Our eldest daughter, Adrianne, who was eight years old when Nathan was born, was completing university in a couple of years. And there were talks about her moving to Japan to teach English for a few years after university. Ryan, our second-born, had just entered university. And our third-born, Jordanne, was a senior in high school and had her sights set on going to university overseas.
Maybe it was all that and more that cluttered my “space” and challenged my equilibrium. However, through it all in a quiet moment, a clear thought pushed through the clutter, and to the forefront of my mind, “where does mommy end and where do I, me, Christine Elizabeth Staple Ebanks, begin?” I really don’t know.
So here I am with Nathan, nine years old. I have been up the mountains and down in the valleys with him. Since his birth, I have braved raging rivers of emotions and moved forward in torrential downpours of uncertainty. I have trudged up the mountains of tests and hopes, and painfully tumbled down rugged paths of failed programs and despair. I was inconsolable. My faith in God was sorely tested. And I felt, that at the end of the day, the only person who was really able to help, was me.
Back then, cocooned in my world of anxiety, I used to think to myself:
How was I going to cope with all of this?
What would become of me?
What could I do to take back the reins of control of my life?
How could I possibly face a future that I couldn’t see, especially when I am facing a future I really didn’t understand?
What should I know that I don’t yet know?
Where might I find help? Support?
Could I make it?
Did I have the strength for all of this?
The questions were fast, furious, and unrelenting!
I would sleep, but my mind would still be awake with subconscious thoughts of unanswered questions, unresolved issues, and concerns. I would awaken, but with the low energy of slumber, smothered by fear and anxiety, submerged in the dark of “not knowing.”
I could not see even a single shard of light. I did not know where to turn. I didn’t know what “in” was, or where was “out.” Mind, body, and soul were crushed, crumpled, and in a seeming state of paralysis. Depression was my constant companion and I felt like my life was over.
During the earlier years, my constant desire was to have a “journey companion.” The kind who would “journey” with me through the twists and turns and narrow, sometimes suffocating corridors of the entire experience of “acceptance,” “coping,” and “embracing.” The kind of “journey companion” who would mirror my thoughts, perspectives, and emotions. That “journey companion” would know to hold my hand when it needed to be held, help me take another step when my feet got too shaky, and say the right words to encourage and console. And, do all of that, in just the right tone, timing, and even volume when I had a need. I wanted another ME—a better, stronger, positive, more full of faith “me.” I wanted ME to be there for “me” when my own diminished “me” could not adequately sustain the “me” that was enduring my journey. But, as you know, those were the thoughts from an addled mind and an ailing heart.
I wish now, that I’d had someone then, who had been there to share with me what I will share with you in this book. It might have eased my burden somewhat. It might have helped to allay some of my earlier, almost crippling fear and dread. It might have made a difference to my perspective and my responses. It might have helped me sooner, rather than later, to embrace realities and be empowered; rather than be distressed by the blessing of being the mother of this amazing child, my gift from God, my precious son—Nathan.
In this book, How to Cope: Parenting a Child with Special Needs, the focus is a little different. It’s written just for YOU—to inform, guide, teach, encourage, inspire, empathize with, and comfort you, as new or experienced parent(s), caregiver(s), or just supportive friend(s). Although your child’s disability will be addressed (because both are related), it’s all about you, underpinned by two clear messages:
- You are not alone
- You will be FINE! It won’t be easy, but you will get through this
Whether you are a new or experienced parent with an uncomfortably sneaking suspicion that there is something wrong with your child’s development, or you are coping with a new or not so new diagnosis, this book is written for you. It will provide you with invaluable insights born from experience, knowledge founded on research and professional expertise, and a rich reservoir of inspiration and encouragement culled from the shared anecdotal experiences of the several contributors to this work. Altogether, you will be empowered to better understand and respond to the different world that you and your family have entered.
I pray that by sharing my journey with you if you are such a parent, guardian or caregiver, you will be assured that though there will be much trepidation and challenge, you are not alone. Help, guidance, and support are at hand and “every little thing will be alright.” I pray that you will undertake—with a positive mind-set and a heart full of love and acceptance—this “road less traveled,” knowing that all is well.
I know all this to be true, for I am a fellow traveler.
special needs parenting